Parents, Feds Fight For Kids Stuck In Nursing Homes
MIAMI — At the Plantation Nursing and Rehabilitation Center on Northwest Fifth Street, frail men and women with wheelchairs, walkers and hearing aids live out their last years in an institutional setting. Nearby, but in a world of their own, medically fragile youngsters at the start of life’s journey spend day after day, year after year, confined to cribs.
These children may spend the rest of their lives right here, with little to do but stare at a television, watched over by shift workers.
They are the littlest residents of Florida nursing homes. And they occupy an institution within an institution, a place called The Kidz Korner.
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Court records in a federal lawsuit that’s before U.S. District Judge Donald M. Middlebrooks in West Palm Beach this week describe the above conditions. The complaint asserts that Florida’s reliance on such institutions for the care of fragile children is a violation of their civil rights and an affront to federal laws that require the housing and treatment of people with disabilities in home-like settings whenever possible.
The legal drama, a decade old, could result in a reckoning for Florida.
The state likes to boast of its stellar finances — the $117 billion budget approved this month set a record. At the same time, it tightly rations funds for the care of children and others who require help. Regardless of need, lawmakers decide what they want to spend on Floridians with severe disabilities and medical needs. When the money runs out, that’s it. And for those left out, it’s sorry, maybe next year. It’s why Floridians needing social services languish on waiting lists for years, even decades.
Providing at-home nursing assistance and medical equipment might not cost much more than a nursing home bed, while allowing parents to nurture their fragile children at home. With Medicaid managed care plans dispensing the state’s dollars, though, few families are approved for round-the-clock nursing care, children’s advocates say. Those who are approved must cope with notoriously unreliable in-home nursing, a byproduct of the state’s penurious reimbursement rates.
And so parents, many of whom cherish their children and want to show them love and affection, are forced to put them in nursing homes, sometimes hundreds of miles distant. Kidz Korner is one of three nursing homes in the state that currently house children.
“This warehousing of children,” said Kenneth Goodman, who founded and directs the medical ethics program at the University of Miami Miller School of Medicine, “is beneath us.”
“If we saw children being treated this way anywhere else, we would see it as a form of abuse or neglect,” Goodman said. “We choose to allow these children to languish. And that is morally unconscionable. It is willful and collective abuse.”
State health administrators long have insisted that the care children are given in nursing homes is superior to what parents can offer.
But the state’s own inspection records speak of children left for hours in diapers “soaked with urine,” of children contracting dangerous respiratory infections from contaminated medical equipment, of a child losing nearly 50% of her body weight, of soiled, moldy buildings and piles of dirty laundry.
Mary L. Ehlenbach, the medical director of the Pediatric Complex Care Program at the University of Wisconsin in Madison, wrote in a report that parents often are held to a higher standard than the institutions that are being paid hundreds of thousands per year. Some parents, for example, said nursing home administrators told them their children couldn’t go home until the family had a large private bedroom for the child. At the nursing home, though, the children sometimes live three or four to a room.
“Parents don’t want their children exported to institutions 300 or 400 miles away to be warehoused,” said Dr. Jeffrey Goldhagen, the division chief of community and societal pediatrics at the University of Florida College of Medicine in Jacksonville.
Brittany Hayes, the mother of a 5-year-old boy who has spent his entire life in nursing homes, told the Herald: “Most of the time he’s in a crib. Every time I Facetime him, he’s laying down in the crib.”
“If they’d just give me my child, I would make sure he meets his goals,” Hayes said. “He’s just another baby to them.”
Responding to “multiple complaints” about the institutionalization of children with disabilities, the Justice Department’s civil rights division sued Florida health administrators a decade ago to put an end to such practices, saying they violate federal laws forbidding the institutionalization of people with disabilities, especially children.
Florida, an assistant U.S. attorney general wrote in a 2012 letter to the state, “has planned, structured and administered a system of care that has led to the unnecessary segregation and isolation of children, often for many years, in nursing facilities.”
While the confidentiality of state records, as well as the sealing and redaction of documents in the litigation, make it difficult to assess the toll of such isolation, a June 2022, inspection of a Pompano Beach facility for fragile children included this diagnosis for one resident who breathes with a respirator and suffers seizures: “major depressive disorder.”
The state insists that the federal government should mind its own business and allow Florida health regulators to provide care to children with disabilities as they see fit. The lawsuit, state lawyers say, cuts to the very “heart of its sovereignty: the weighing of competing healthcare policies.”
“These children receive care in nursing homes not because the state violated (their civil rights), but because their parents or caregivers made, and continue to make, the emotionally difficult decision — under practical, complicated, and individualized circumstances — that care in a nursing home is the best option for their children and families” the state wrote in a recent court filing.
In recent months, the Justice Department and the state filed thousands of pages of new records in the lawsuit, including reports and sworn statements from pediatricians, scholars and others who describe Florida’s policies as archaic and cruel. The new records include statements from parents who say they would very much like to care for their kids at home — accounts that are at odds with the state’s long-standing claims.
Central to the litigation is Florida’s perennially troubled Medicaid program, insurer of last resort for impoverished children and adults and Floridians with disabilities. Nearly 20% of the state’s population is enrolled in Medicaid, records say, including almost 43% of all children — and a little more than half of children with special health care needs.
The state set aside about $28 billion for Medicaid-funded health care, an arbitrary figure that is not nearly sufficient, forcing care to be rationed.
The result is that tens of thousands of Floridians with disabilities are on a wait list for community-based or in-home care, and many will die before they reach the top. Medical foster care, a separate program for frail children whose parents want to keep them out of institutions, also has a wait list. And, to access the program, a parent must relinquish custody of his or her child to the state — a requirement many parents find inhumane.
With little hope of ever getting the in-home nursing or other services that could keep the medically complex children home, the Justice Department says, parents make the only choice they can: They leave their children in nursing homes, sometimes hundreds of miles away from those who love them.
Dr. Walter F. Lambert, a pediatrician who is an associate professor of clinical medicine at the University of Miami, said children’s well-being depends on far more than medicines, technology and nutrition.
“It’s sad that health administrators don’t consider the mental health of these children, and their need to be with their own family or in a family setting as an important part of their overall health, especially children with disabilities,” Lambert said.
When the lawsuit was filed, six nursing homes housed pediatric patients. By 2013, after the Miami Herald had written extensively about conditions in the homes, though, three of the facilities had shuttered, including the children’s unit at Golden Glades Nursing & Rehabilitation, now called Sierra Lakes Nursing & Rehabilitation, a 180-bed facility near Miami Gardens where the Herald documented the deaths of two children.
Among them was the plight of Marie Freyre, a 14-year-old with cerebral palsy and seizures who died within 24 hours of a long, bumpy ride from a Tampa hospital to the Golden Glades nursing home, ordered despite objections from her family. The girl arrived screaming in fear.
The same month as the Herald’s reporting, December 2012, the Department of Children & Families quietly implemented a new policy that required high-level agency approval before any child in state care could be admitted to a nursing home, or move from one institution to another. Only nine children in state care — that is, in the protective custody of DCF — now live in nursing homes, the state said in a court document.
There are now three pediatric nursing homes in the state: Children’s Comprehensive Care Center, with 36 licensed beds, in Pompano Beach; The Kidz Korner, with 100 licensed pediatric beds; and Sabal Palms Health & Rehabilitation, with 34 licensed pediatric beds, in Largo, a city in Pinellas County.
Ian Trenchfield, Kidz Korner’s administrator, acknowledged during a November 2022 deposition that an inability to secure in-home nursing care sometimes keeps children from going home. One couple, he said, had to return their child to the facility after learning their private duty nurse quit the job before even starting.
“The state’s efforts in this respect,” wrote Sara S. Bachman, dean of Social Policy and Practice at the University of Pennsylvania, “fall woefully short.”
Bachman and other experts from across the United States wrote in Justice Department reports filed in court that, by dint of a rigged funding system, health administrators and employees of the three nursing homes funnel children into institutions that they cannot leave. The state currently pays to house about 140 children in long-term care facilities. The Justice Department contends another 1,800 children are “at risk” of being institutionalized due to lack of community resources.
Experts wrote in reports that some facility employees told parents several falsehoods that kept the children trapped in institutions: that the parents lacked adequate space to care for a child with a disability; that they could not be trained to provide care themselves; and that their kids would perish without the specialized care only a nursing home could provide.
“We would need to learn to care for her alone,” one mother said she concluded after having her choices explained to her. “We were terrified.”
Said another mother in a report filed in the litigation: “I didn’t want him going into the facility … I wanted to bring him home.” But, she added: “I was told the facility was the only option.”
And almost half of the 22,000 people on the state’s wait list for state-funded community care — generally designed to ensure Floridians with disabilities are not segregated in isolated institutions — are children, Bachman wrote. She added that 800 of the 10,000 children waiting for services are considered medically complex.
No matter where fragile children receive care, it is never inexpensive. One of the South Florida homes charges more than $235,000 per year to care for children considered the most “fragile,” according to court records reviewed by the Herald. Medicaid currently pays $253.51 per day for elders in nursing homes, or $92,531 per year, according to the state’s long-term care industry group.
In contrast, the Birth-Related Neurological Injury Compensation Association, a Florida program that oversees health care for children with profound brain injuries and disabilities, pays about $229,950 per child annually for around-the-clock in-home nursing by licensed practical nurses, said Melissa Jaacks, NICA’s director.
Of 235 participants in the NICA program, only two live in institutions at their parents’ request, Jaacks said. The rest live with their families or in other community settings, most with varying amounts of in-home nursing support, or care provided by their parents.
“Having a kid like this can break you,” said Jaacks, a former child welfare administrator who took over management of the NICA program last year as part of a massive reform. Many of the parents served by the program, she added, become remarkably skilled at caring for their medically complex children, and are paid by NICA to perform procedures — like suctioning a breathing tube or feeding a child by tube — generally done by nurses.
“These parents are the experts in how to care for their kids,” she said.
The Agency for Health Care Administration, which oversees the state’s Medicaid Program and regulates nursing homes, declined to discuss allegations in the court file. Bailey Smith, the department’s communications director, replied to an email from the Herald: “The agency does not comment on pending litigation.”
The state says that only a small number of children live in long-term care facilities. Administrators say 99.8% of Florida children with complex medical needs live at home or in other community-type settings, with a price tag of $500 million per year.
In recent weeks, the state has filed reports from experts who defend caring for children in congregate settings. One doctor suggested that many children with medical complexities are simply too impaired to benefit from living in a home environment.
“Some children would derive no benefit from in-home care. Sadly, many of these children suffer from severe neurologic issues and are in chronic, deep comas with no chance for improvement,” wrote Dr. Allan Greissman, a critical care pediatrician at Joe DiMaggio Children’s Hospital in Hollywood.
“They have no cognition and do not interact or respond with the environment. They are fed by a tube and kept alive by a ventilator. They suffer with chronic issues causing ventilator dependency. They develop bed sores and have frequent infections. Their lives consist of laying on their backs, hooked up to a machine. Whether they are in the ICU, a chronic-care facility, or home, no socialization or nurturing can be done,” Greissman added.
Ehlenbach, the federal government’s expert, described in her report meeting several children who were anything but comatose: “I observed institutionalized children who did not appear to have severe chronic medical conditions or significant functional limitations. At Sabal Palms I observed one who was sitting alone in a stroller at the edge of an open common area.
“When I interacted with her, she tracked me with her eyes and smiled at me, clearly engaged with the interaction. One extroverted child approached our group by walking up to us and speaking. The child described our group as “an ensemble of eight.”
Previously, Liz Dudek, a former secretary of the state’s health care agency, insisted that the nursing homes were “warm, nurturing” places that offered a variety of enriching activities to their children — such as trips to farms where children can ride horses — a claim that is at odds with state experts, like Greissman, who suggested many, if not most, of the children could not safely leave the nursing home.
Records from the Justice Department lawsuit — and from AHCA’s own inspections — portray a grim reality inside the homes.
In 2016, Charles Nelson, a professor of pediatrics and neuroscience at Harvard Medical School, visited nursing homes housing the children and filed a report as part of the litigation. He wrote that youngsters “spent most of their time in bed, some with TV monitors to look at, others without. As a rule, the children’s aides were rarely in the room with the child unless the child needed medical attention or was taking part in some programmed activity.”
A “classroom” activity at one nursing home, for example, consisted of children watching a movie. At another nursing home, Nelson wrote, “I did not observe any classroom instruction taking place.”
Describing a 16-year-old at one nursing home, Nelson wrote that he “found (the boy) in his crib, completely hidden under his blanket, left entirely alone.”
“What was common across all three institutions,” Nelson wrote, “was a profound sense of social isolation.”
It is difficult to glean from the litigation whether such practices persist. Though the Justice Department’s experts once again toured the remaining pediatric nursing homes, in May and June of 2022, records of their findings have been sealed or redacted in the court file.
Agency for Health Care Administration records offer some insight into conditions within the pediatric wards of the three nursing homes.
Two of the three homes — Sabal Palms and Children’s Comprehensive Care Center — have been on the state’s Watch List of homes that “did not meet, or correct upon follow-up, minimum standards at the time of an inspection.”
An attorney for Sabal Palms wrote in an email: “After reviewing this matter, Sabal (Palms) is going to decline the request for comment.” Ian Trenchfield, the administrator of Kidz Korner, declined to discuss the litigation.
In a short emailed statement, Trenchfield wrote the facility “is meeting an important need: helping children who require complex medical care continue to thrive and if able, return back home. Our goal is always to provide the children we serve with the highest quality care and quality of life possible and help the families cope with the everyday challenges of caring for a child with a disability.”
Marjorie Evans, CEO at Children’s Comprehensive Care Center, spoke at length with a Miami Herald reporter. She defended the quality of care at her facility, but also strongly agreed with disability advocates who claim that nursing homes are poor substitutes for parents who have adequate resources to care for their children at home.
“I don’t think children should be in any skilled nursing facility long term,” Evans said. “If I had my wish,” she added, “I would not allow kids to be in a long-term care or skilled nursing facility.”
Evans said Children’s Comprehensive Care is unique among long-term care facilities in Florida that accept children: “We try to get them out.”
Children’s Comprehensive Care Center spent 80 days on the state’s Watch List from June 20, 2022, until Sept. 8, 2022, for violating fire safety codes.
A June 2021 state visit reported that one boy spent most of a day without having his diaper changed, despite repeated inquiries from an inspector. The report quoted a staff member: “She stated she has been busy.”
At 4:14 p.m., when caregivers got around to changing the boy, the report said, his diaper “was soaked with urine” and reeked. As to the child’s activities, the report noted he was sitting in a wheelchair, either playing with a toy or watching television, during five observations from 10:14 a.m. through 3:39 p.m.
Last June, an inspector faulted the home after a child developed a pressure wound on his foot that was left untreated for two weeks. That same report described another child who was found wearing two diapers — one atop the other — while being “saturated in urine.”
In June of 2022, inspectors reported the interior of a medication refrigerator in the facility’s nursery that was “heavily soiled and (had) large areas of brown dried matter,” numerous holes on the walls, and ceiling tiles that were “heavily soiled and stained.” The floor of a respiratory storage room was “heavily soiled and littered with trash.” A clean linen storage room had what appeared to be yellow mold “with visible spores.” The report said the facility failed to dispose of garbage properly.
That inspection also faulted the facility for failing to “provide enough food (or) fluids to maintain a resident’s health.”
One resident told inspectors he ate only the macaroni and cheese and Ramen noodles his mom had delivered because “the food here is terrible.”
Said another child: “The food has been lousy for years.”
In May of 2021, AHCA inspectors reported the home failed to act when a child went from 34.8 to 27.9 pounds in one month. When asked about the weight loss, the home’s dietician disputed the finding, saying she recorded the resident’s correct “weight on papers that she kept in a folder in her bag that only she had access to.”
The next day, the facility’s nursing director produced a new weight chart in which some of the resident’s weights had been “crossed out,” a report said. The page with the alarming weights was later removed altogether, the report said. The nursing director also showed an inspector a “nutrition progress note” for the child that had been back-dated by two weeks.
The report said a second child lost 53% of his or her body weight, going from 52.9 pounds on April 6, 2021, to 24.6 pounds on May 2, 2021. The report said no efforts were made to address the “severe weight loss.”
Sabal Palms in Largo, which is licensed for 244 beds, 34 of them pediatric, accrued 157 days on the Watch List since 2020, state health records say. In June 2022, for example, the home was placed on the list for failing to timely report the abuse or neglect of an elder who suffered a painful fracture when her right leg got stuck under a wheelchair.
“She stated it was two weeks before she was able to go to the hospital,” a report said. “She stated they (the facility staff) thought I was faking it.”
In October of 2020, an inspector who had visited Sabal Palms’ pediatric unit reported that “the facility failed to ensure residents received adequate respiratory care” by, among other things, not assuring staffers used proper hygiene and infection-control precautions and not investigating properly when three children were found to have respiratory infections from “organisms found within contaminated water and soil.”
One of the children, whose chart described him as “fragile,” had pneumonia.
The inspector reported that a respiratory therapist donned a pair of gloves without first washing his hands before suctioning a child’s breathing machine. That same day, the inspector wrote, a different therapist “put on clean gloves without practicing hand hygiene,” and was later seen putting clean gloves atop dirty ones.
In August of 2019, AHCA inspectors faulted the facility for performing life-saving measures on an unresponsive child, in contravention of a do-not-resuscitate order signed by the youngster’s mother and doctor.
Sabal Palms’ risk manager told the state that, under the facility’s procedures, someone should have reviewed the child’s chart for instructions if he stopped breathing, “but nobody checked it.”
Despite documentation of such conditions, state social service administrators and nursing home staff long have maintained that children with medical complexities are far better off in facilities than with family, and that parents are inherently less capable of being caregivers.
“For many children, home is both a safe and a loving, nurturing environment. But for children with complex medical needs, that is often not the case,” wrote Greissman, the state’s expert. “With patients who have complex medical needs, ‘safety’ means anticipating the ‘what ifs’: what if something were to happen? For this reason, care for patients in the home can be fraught with risk.”
Some parents, Ehlenbach wrote in her report, were told their children were too profoundly ill to survive outside of an institution, or were going to die soon no matter what.
“We didn’t expect her to make it out of 2021, and now in 2022 she is doing better’,” one parent told her. Ehlenbach added: “Indeed, many of the staff members at the nursing facilities also shared stories of children who had unexpectedly survived and then became long-term institutionalized children.”
Medical staff at the nursing homes may encourage families to fear caring for their kids at home, experts wrote. But when children in the nursing homes experience an emergency, they generally are sent by ambulance to a nearby hospital, just as a parent would do, Ehlenbach wrote.
In her report, Ehlenbach called a “myth” the contention of caregivers at one nursing home that the program was equivalent to a “mini-pediatric intensive care unit.” The three nursing homes Ehlenbach visited met few of the requirements of an intensive care unit, she wrote, including staffing: ICUs should have one nurse for every two patients; some of the nursing homes had 10 children for each nurse.
Parents told experts that nursing homes made it nearly impossible for families to bring their children home, describing discharge planning as an endless series of moving goal posts. One parent expressed immense frustration at efforts to bring their child home from a nursing facility. “No matter who I scream at, nothing gets done,” the parent told Ehlenbach.
Wrote Ehlenbach in her report: “Several families described feeling desperate to be reunited with their children. One family member poignantly shared, ‘Pretty much short of robbing a bank, we’ll do what we can to bring him home’.”
© 2023 Miami Herald
Distributed by Tribune Content Agency, LLC
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